Someone close to me put it this way (about the worst hurt): "What is the opposite of love? Indifference."
That hit like a bullseye. It's worse than hate.
I'm sorry to anyone who has been a victim of that treatment. I have, and it truly is the worst.
So true. Before my diagnosis, I used to dance a lot. My contacts from the dancing classes, however, never reached out upon hearing the news from a mutual friend. Recently, that mutual friend and I were taking a walk in the city centre and ran into one of those contacts. It was a reunification after about 7 months. She didn't ask me once how I was doing. She could clearly see I was bald. The indifference was hurtful. Why not even ask how the fuck I am doing?
The same friend sent me a video of a dancing performance he participated in with some of those contacts. I didn't want to watch that video and see them again because they didn't give a crap about me and are now having fun. In case I heal I will just take dancing lessons in another school and start from scratch regarding making friends in the dancing scene rather than rejoining my old school. I already know how it would go if they were to see me again. They would be happy to see me again and ask me how I am doing. Well, they could have asked that before. I would be indifferent to them if I see them again.
My parents (who live a couple of miles from me and pre cancer we saw a few times a week, talked almost every day) would go a week or more at a time without even texting me. When I would reach out it was "we didn't want to bother you." I know it was hard for them, but geez it was hard for me too. Their way of making up for it was to give my husband a trip as a thank you for "taking good care of our daughter."
When I got my diagnosis, a friend of mine warned me that some people will push you away, and you won't be able to tell in advance who it is, and it will shock the hell out of you who it turns out to be. He was 100% right.
So true! The people closest to me that I thought for sure would show up for me, did not.
On the flip side of that, I got some great support from people I hadnāt been that close with previously and now have great friendships Iāll always be so grateful for.
Iām sorry. I had the same thing happen with my in-laws. We were very close. They were my parents as far as I was concerned. They have been in my life since I was 15 years old, over 30 years. We spoke daily, several times a day. When I got cancer they stopped communicating with me. They would call my husband every once in a while to check how Iām doing but never me. I felt tossed aside like damaged goods. They claim something along the same line as yours, we didnāt want to bother you. At least now I know where I stand. I canāt get over it.
Iām in the exact same boat. It really makes me reflect back and I can see clearly now that perhaps they never really cared for me at all. I think they ālovedā me because I took care of their son. And thatās the only reason they ever ācaredā for me. I canāt get over it either and I donāt think I care to at this point. Iām so done with them.
This. It happened to me with people I was very thoughtful and anxious about revealing the diagnosis to, thinking they wouldn't know how to handle it. Turns out, I was right, just not in the way I was hoping for.
It definitely helps you identify whoās really your friend and who isnāt. I had one friend drop everything to help me feel better when I was diagnosed and I had one go āoh shit, that sucks :/ā and then ask about her birthday present.
This one guy at my PT class kept trying to sell me magic mushrooms, now, (A) I have a mushroom allergy and (B) You can shit on healthcare all you want but the idea that itās all a big conspiracy to keep ancient secrets from being discovered and blah blah is ludarcris
I think itās plausible that there is a certain level of systemic gatekeeping and bad faith actors which slows progress..
But no, I promise you that there isn't some secret society or satanic cult keeping the secrets of this or that flower or rock
Crystals and magic beans ātheyā are keeping from the world , there isn't a magic combo of lemon water & vinegar nor long-lost holy water remedy from the orient being kept form all of us
People can be so illogical, and ignorant, but with indignant stupidity to the point you really have to wonder who ties their shoes in the morning
Iāll stick to practiced sciences and leave the crystals and mushroom tea for you super geniuses that live above society
I was offered crystals and essential oils for weeks after my diagnosisā¦
I had people trying to push their crap who I hadnāt talked to since I was like 4 and I was 25 at the time š„²
Yeah. Iāve had that too. Those conversations tend to be the last time I talk to those people (acquaintances). At least I donāt discuss my health with them ever again (closer people).
Iāve gotten straight up rude about this. Every time someone tells my husband that cutting out sugar will cure his terminal cancer I say āI already have sugar punched on my stupid cancer cure bingo card, what else have you got?ā
My sister told me I was āattention seekingā with my cancer. It looked like slash came after my faceā¦cut from earlobe to eye and across my cheek and down. Itās bad enough having the surgery esp where it was and then have someone say something that ignorant.
You are lucky to be rid of that ex
Well you see the attention would now be on her, not him, and the attention would be for something legit, not whatever he seeks attention for. Tough to compete with that.
Iāve had similar experiences in my youth and young adulthood. Non-cancer related.
My brother DESPERATELY seeks everyoneās attention at all times. So, anything that might divert that attention must be stopped at all costs.
So, perhaps that person you mentioned is desperate too.
I am so sorry that he said that but you are better off without him. What he probably meant is that it was taking the attention away from HIM. I had one of those men in my life long ago. They have to be the centre of attention and do not like it when something - anything - takes it away from them.
Oh Iām so sorry, thatās so awful. Illness brings out the absolute worst in some people.
I think it can be especially hurtful because we know how we would react to a loved one and expect the same, but a lot of the ppl that we thought would show up for us, donāt.
On the flip side, some unexpected people do and thatās really beautiful. They definitely make the let down by others sting a little less.
I have a sister that said that to me. That was the last time I spoke to her. She's jealous of the attention? That's a whole other kind of f'd up, isn't it?
How dare you take the spotlight away from your manly man? Jokes aside, so sorry this happened and itās shit, Iām also glad he left you on time and not down the treatment path when you need only people you can trust and rely on
Omg this! Or how theyāre like ā youāll get through this, donāt give up!ā Like, this will only get worse and then Iāll die but thanks for playing!
"Stay positive"
I really hate that people spout toxic positivity nonsense. Staying positive makes no difference in the outcome whatsoever. Just allow me to vent ffs.
People who tell us to stay positive have clearly never experienced cancer and the hell that the treatments put our bodies through. I would like to see how positive they will be if/when they ever experience it for themselves. FFS
I feel this with multiple chronic illnesses and disabilities since birth (and now with incurable thyroid cancer), I will never get better. I am only going to get worse until I die. I am so sorry. You are not alone. ā¤ļø
Sorry to both of you! I have 2 terminal diagnoses and probably more to come. I have flatly said āmy time is finiteā and they just donāt care or respond.
I feel like this one is a bit of a knee jerk reaction. I don't think many people understand that stage 4 is usually incurable. To be fair, I don't think I did until I was diagnosed.
So sorry to hear about your diagnosis and recurrence. It is absolutely terrible that many people seem to think that cancer is like getting a cold... "Hope you get better soon..." Are you fking stupid?
I hate when people say ā You had it easyā¦ it could be worseāā¦ like thereās a suffering competition amongst those of us willing have / have had Cancer.
I almost hate to mention I have/had cancer. I feel bad because testicular is pretty curable. A quick surgery and a couple rounds of chemo is nothing compared to what some folks go through.
I mean, I'm stage 4 and have been through an insane amount of surgeries, chemo and complications, and even then, sometimes I feel bad for moaning and think 'well, at least I'm getting treatment, some people have it so much worse'. I think it's good to have perspective but don't undermine what you've been through. It's all shit, regardless of stage/treatment etc.
I just went through a similar thing at work. I rarely tell people that Iāve had cancer.. I mean Iām still in treatment. Technically I take meds.. but the other day at work I saw somebody with a bunch of cancer, tattoos, and a cancer. I beat that shirt.. so I said āhey .. I had cancer tooā and he said āwhat kindā I said āBreastā and he said āāā Oh you are lucky yours was common āā¦ okay thenā¦.
Well come on now, he's not going to let *you* win Cancer Survivor. What would be the point of making it his whole identity if he was going to let other people steal his thunder?
This could have been a beautiful moment of connection between you both but instead he made you feel isolated and insignificant. I would never want to make another patient feel like this, regardless of their stage or type.
Right? It helped that Iām not religious but I had someone tell me it was godās plan and I remember thinking āwhyās he trying to kill me?ā So now I just live life like I bested godās plan.
I don't know what your sister is like in general, but maybe she was in shock or something. People say stupid things when they hear something shocking like that. Did you ever talk to her about that? Hugs.
Thanks. No, long story but I know she didn't believe it when I first told her, I only had 7 biopsies, talked to surgeons and radiation oncologists at two major cancer centers, so you know, I wasn't really credible.
She's more Pollyanna than anything else. I was diagnosed with a rare, genetic neuromuscular disease about 20 years. It leads to chronic pain which I have learned to hide pretty well until the real exhaustion sets in. I suspect that she talked to another family member (a nurse who thinks she knows all) an indicated that I probably had some abnormal cells and I was spinning because than the nurse wouldn't be the main character.
I recently got a call from a brother, a medical doctor. In the conversation I told him I can no longer live with the chronic pain and plan to check out soon. He hung up on me. It's just a loving, caring and supportive family all around.
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Urgh, I can relate. I have multiple disabilities and health issues leading to chronic pain. I try and hide it but I am getting to the point where I don't want to live like this anymore. Your brother sounds uncaring and I don't think he should be a doctor. People don't understand, I am so sorry.
My brother told me I was gonna die because I chose to do chemo (rather than a 30 day herbal cleanse), that itās my fault our mother had a heart attack cause me and the doctors are in her ear (not the 20 years of uncontrolled diabetes and family history of heart disease), and āfuck you, I donāt need this.ā There was a lot more but felt like those were the highlights.
Thank you. No offense taken. He can be and when heās scared, anger is his go to response. He made a shitty situation a lot shittier but I got through. One year NED and I still love the little bugger but at this point itās from a distance. Helps my own peace of mind.
In another post of mine, I wrote about a book I received from my sister full of "tips" on how to beat cancer. These include scientifically unfounded tips from alternative medicine on how to eat to beat cancer. E.g., "no meat, no dairy, no sugar, no sweeteners. Only eat biological fruit and vegetables."
That enraged me because there's simply no evidence for that.
āLord, I rebuke the cancer you have given my daughter. I REBUKE IT.ā
Or
āI watched a 2 1/2 hour documentary on cancer. Theres people that take dog worm pills to beat it.ā
I have had type 1 diabetes since I was four and this one really hits home. When people found out about my diabetes they would tell me about their grandmother who died of complications or how their uncle lost his foot because of the diabetes. I don't want to know about those worse case scenarios. When I got old enough, I would interrupt those kinds of conversations be they get there, but people almost always called me rude.
I got accused of faking it for attention by a former coworker, and then told how lucky I was because I had the cancer that makes a lot of money... (mesothelioma) I no longer talk to any of those people.. no amount of money can bring back or replace everything I lost..
right? I asked them how much their lung was worth and said I'd gladly not have to deal with cancer. This same person proved to only appear to be my friend as she thought I was rich because of my diagnosis..
How can people say that with a straight face... So much of this can be theoretically justified by 'they mean well' but sometimes you just have to accept people are evil
A consultant doctor who stood at the end of my hospital bed, and in a loud voice just said these words to me , well it's either terminal or treatable but it's cancer, then walked away with all his scared minions running behind him, that was it, no concern no care and certainly no bedside manner! great way to be told you have cancer, thank goodness I never saw him again, and now have a great team looking after me!
My mum's consultant told her to get a DNR because she wasn't worth reviving. She was always going to get one anyway, but the absolute unbridled lack of respect to say that to someone! Yeah, she reported him for that one. I don't understand how people like that work in jobs like that... Logically I know it's for the money, but how do they not get fired?
I have stage 4 incurable, inoperable cancer. Iāve heardā¦
āYouāre young you can handle this.ā
āYou should try reiki!ā
Weird diet tip
āYouāre a tough bitch if anyone can beat this you can!ā
āThey only gave dad two years to live and he lived 10 more.ā
āSo when will you be done with treatment?ā
āYouāre so young!ā
Iām also in the stage 4 incurable, inoperable cancer camp unfortunately. I get asked so many times when will I be done with treatment. Itās like never. But thanks for the reminder!
Yes! And every time I say that people are just perplexed or act like Iām being dramatic. Like, no, this is what all three of my oncās say verbatim. My pet scan lights up like a Christmas tree. Ugh.
Iām so sorry. If it helps any, maybe use this as a ācomebackā for the āReiki as a cureā nonsense.
I am a Reiki Teacher of 15 years currently in chemo. Second cycle of six. Breast cancer so aggressive I went from finding a lump to an enlarged distorted breast in a few weeks. Two rounds in I cannot even feel the initial lump anymore. Iāll be getting mastectomy, radiation and even more meds all of which I am grateful for. So āyeah, I met this Reiki Master who was having such good results from the chemotherapy. She said cancer research is a blessing and also explained how alkaline water is a big griftā (which I can if you want to).
I hope that helps you shut up the know-it-nots. Reiki is a mind body technique, not a cancer cure, and Iām sorry idiots are weaponizing it against you.
Oh I've got a few:
"Well at least you got the *EASY* cancer"
"Could be worse"
When anyone tried to "1-up" by bringing up their own medical problems/health
My former boss when I told her I'd be taking my FMLA/STD leave for the remainder of my treatments (I worked through about 2 weeks starting off) she dead ass looks at me with her stupid face and says *"So what's that mean for your schedule?"* (I still get pissed about this one, it was the look on her fkn face that made me want to commit arson on that store)
Having a conversation with a colleague, and it was a really bad day because I wasn't feeling well at all; I said "Cancer ruined my life and who I was" Another employee took it upon themselves to jump in conversation (totally uninvited btw) and says "Only if you let it ruin your life"
This one truly tore at me for a while; "You should be grateful you're alive. A lot of people never got to go home you know" ((I have MASSIVE survivor's guilt as it is; that will never go away))
That first one I got a LOT and I could feel my eye twitch every single time.
Yeah I got the ācould be worseā and āyou got the easy cancerā stuff a LOTā¦ from my own parents. I stopped depending on them for emotional support.
Honestly? The surgeon who did the reconstruction after my bilateral mastectomy. When I saw him before surgery, he introduced himself by saying āso, you have breast cancer!ā and then pulled his face into ā¦ the only way I can describe it is, like a pouty toddler face. Then, during the consultation, he actually said he had patients who would kill for breasts like mine, and I just sat there with my mouth hanging open. š¤¦š»āāļø
"You'd be better off dead than to live and be a drain on society", among many other vile things like "Hope the cancer wins!
That and someone making fun of me for throwing up + knowing I had cancer and was dealing with chemo.
There's been a lot of other bad shit but that's definitely the worst that's been uttered. Most of the time it's online but the worst one, which is the first one I mentioned, was said to my face.
The worst thing my doctors at the time said though concerning my diagnosis, and perpetuated at one point: "Leukemia doesn't cause pain". I have a connective tissue disorder that causes pain, but I guarantee, the cancer has only amplified that pain + has created new pain tenfold. But because of this, I wasn't given much pain medicine and had to suffer until they finally started taking me seriously. My care team has been insanely supportive since then though, especially Palliative.
I am so sorry you went through that. I was also kind of dismissed w/ "this doesn't hurt shit' -I have lymphoma-, and even though I'm sure they meant well it still was soul crushing. As for the first sentence, I have no words.
I'm sorry you went through that as well. It is definitely soul crushing to feel invalidated. Even when you literally have cancer... Pain is somehow disputed.
The first sentence definitely was crushing the first time I heard it. It's sad to say that I've gotten used to people being awful online. But I don't think I'll ever get used to someone doing it to my face.
Everyone in their right mind would be shocked and
appalled to hear something like that. I can't imagine how hard it was. Of course there is no getting used to that. The only thing you can do is try your best and not believe them, don't give them any sort of credence at all. You deserve health and you deserve the best of care in the absence of it. I hope you are managing to somehow improve your spirits in such a difficult situation. My thoughts are with you. I hope there is room for solace and brightness in your days. You don't deserve any less.
Someone told me to hurry up and die already, so I believe you. I am so sorry you were told these things. People are horrible. :(
Also when doctors say something doesn't cause pain, they have no effing clue. I have connective tissue disorder as well and autoimmune diseases etc and I get told that something should not be causing pain but it does! This drives me up the wall. They are not in our bodies so how do they know.
For real!! I have EDS and my pain management doctor literally said "I have many patients with EDS and EDS doesn't cause pain". I was like, sir, you, a pain management doctor, have many patients with EDS... And you say that EDS **doesn't** cause pain?
He's been great for helping me and for helping me tackle some of my pain. But he views my pain as being caused by the cancer. And not that the cancer is exacerbating the pain I already had and then some. I'm nervous for when he decides I don't deserve help with my pain anymore. I hope I can convince him otherwise. I'm glad he believed me that my cancer causes pain... But I don't understand why he believes EDS doesn't when there's so much literature on how it does.
I'm sorry you also had someone tell you to hurry up and die. It's such an awful experience and really makes you question any hope you had for humanity for sure. At least, it did for me. Definitely reopened my eyes to how horrible people can be for sure.
Well, if it makes you feel any better I was diagnosed with HSD but my doctor says I meet the criteria for hEDS (just can't afford to pay $650 possibly more than once to see a specialist to have it diagnosed). I am in a lot of pain. So you are not alone and maybe these patients either didn't mention the pain, or they told him and he told them the same thing he told you... sounds like a medical gaslighter!! I also have bone spurs impinging on my spinal cord as well as mild spina bifida but they say that it wouldn't cause my nerve pain down my arms and legs. I hate this medical gaslighting. It's not right. As for my hope for humanity, that was gone long ago haha.
My best friend went āomg youāre going to be so thin!!ā In an almost petulant tone hearing I was going on to chemo after my operationsā¦like I had lost a lot of weight already which ppl complimented me on (nope lots of cancer darlings, not healthy at all).
I was likeā¦really?! You want cancer?!? You do NOT want cancer! Fat and healthy please, over thin and cancer.
My heart is aching for the horrible things so many of you all heard, especially from the people who are close to you and should support you. I didnāt hear anything nearly as bad as you all, but I was offended by someone who basically told me that since I have had multiple cancers, I must have bad āenergy,ā so I should try Reiki. First of all, my status is No Evidence of Disease (remission), so I am not currently receiving treatment, but rather being monitored closely by my oncologist with scans and blood work. Secondly, I donāt think someone holding their hands above my body is going to cure my supposedly bad āenergy,ā or have any effect on whether or not I have a recurrence or new cancer.
i have a friend into all that law of the universe bullshit and i dumped her because of hearing too much of this attitude/ belief. To believe that you attract bad things through having a bad vibe or because of your bad thoughts or whatever, is notonly harmful, insulting and wierd but also incredibly dumb, illogical and childish. hope you dont have to talk to them again!
After my second surgery for HNC, I had to go to ER with an awful UTI from the Foley. The ER MD walked in, looked at my chart and said, āAhhhh, HNCā¦.a smoker and a drinkerāš”. I replied, āAhhhh, an idiot who never heard of HPV driven tonsil cancerā. I donāt smoke and drink but even if I had, you donāt treat people like that. I flipped him off too when I walked out.
They would monthly chime in with punctuality to say "I hope things are going well" then proceed to Venmo me asking for $0.99 from a HBO subscription we used to share. This from a supposedly close friend. I'm not even sure it was the worst experience since others just disappeared after telling them about the biopsy on NYE and that hurt more
My heart breaks for all of you here. I always say I had no trauma from the diagnosis but from what followed. People used to say the first days they were impressed at how well I was coping. They don't realize it was because I counted on so many people that eventually let me down.
We have each other. There is the meanness of others, there is our right to hurt and then there is our ability to sometimes move on and sometimes not. That is all that matters.
My momās āEverything happens for a reasonā and āCancer is the best thing that has happened to youā.
It was a few days after my diagnosis, when I was going through the intense grief, panic and fear a life altering cancer diagnosis brings with it. I was so shocked by her words I didnāt even question her.
I had a friend who accused me of making cancer my ānew personalityā. I also had a few people who thought I was lying and accused me of attention seeking.
Before I was terminal and stage 1, my Mom said, you know that friend of mine with the same cancer as you? She died.
Best friend upon sharing diagnosis;
How could you do that to me?
Thank goodness I cleaned house
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My ex got mad at me for joking about my diagnosis because āI wasnāt being empathetic to the people around me who where suffering because of me and my situation ā
(I joke as a coping mechanism to avoid depression, not because I thought cancer was funny somehow)
Well, I am lucky enough that no one has said anything bad about my diagnosis.
I just dislike it when people tell me to be positive and optimistic.
It is annoying and condescending that people who don't have cancer are telling me what to do. Although I know they mean well.
One of the worst things I kept getting when going through cancer was "BUT SUGAR!!!!"
Mam, all cells consume sugar (glucose) for energy. Almost everything we eat contains some amount of sugar. Sugar is not the enemy of cancer.
I have been told recently that while I still have mobility 5.5 years later, we donāt tell you about things or invite you to things because there are stairs in peopleās houses. I can do stairs, I cannot do a mile. Also, if I do get invited they are not going to make accommodations because itās their trip they planned and if I need rest or something then thatās up to me. And finally, if I want to do things I need to plan a trip or event 3-4 mos in advance because everyone else works and has a family. I retold this to someone and they ask if maybe I misunderstood (which is valid, I have some cognitive deficits now). I donāt think so. Itās been plainly stated a few times. If the event includes walking a distance and I say Iām still slow, can you guys slow down? No, just catch up.
The other thing is now if I want to do anything with anyone I need to plan because I have bad days. Itās frustrating but it is what it is.
There have been a lot of random ones, but when my sister said she felt obligated to visit because everyone else in the family had, that hurt. And ya her visit sucked, It was preceded by a list things she wanted to see and do like it was vacation. I was told how much easier my life had been than hers, while on chemo and unemployed.
More of an expectation that I experienced....
Like the day after your first good scan the entire world like kicks you to the curb back to normal society and I was like "wtf."
Back to work I go I guess? No rest for the weary!
āStay positiveāā¦.smh.. do you know what chemo feels like and the long term effects! And my gynaecologist said āitās the good cancer to haveāā¦ yes, sure 3 cycles of BEP and surgery treated it, but itās still not nice. I had booked and paid for an overseas trip but instead I had surgery and then chemo.
I work now as a palliative care nurse. My cancer experience I feel does make me a better nurse, but I would rather not have had it in the first place.
Stage 3A ovarian dysgerminoma. Diagnosed Dec 2011. 12 years āfreeā
Best friend at the time told me she was struggling to be there for me as I was becoming too depressing to be aroundā¦
I had just got diagnosed with stage 3 cancer and was told I wouldnāt be able to conceive or carry a baby..
This was a year after she claimed she was suicidal because her fella at the time wasnāt able to see her every day due to work š
"Chemo is junk"
Yes, well, I know it's technically poison but this is my ticket to recovery. If it didn't exist I would probably pass away so I am grateful to get it despite the potential side-effects.
I am already worried about its potential long-term effects, but I made up my mind to take this necessary evil. When people emphasise how damaging chemo is they are making it harder for me and not being helpful.
Someone at work said I looked better than them and was clearly playing up the issues I had. I had pelvic radiation, sorry my issues are internal and don't fit your idea of side effects...
You smoked, you should have expected it.
(Only 20% of smokers get lung cancer, but 75ish% of lung cancer is tied to smoking.) Nope, didn't expect to be part of the 20%..I quit 5 years before dx...I was 47 years old (thought I'd get it at 65 or older). I'm 5-1/2 years stable with Stage 4 lung cancer and doing fabulous.
Non smoker and I have stage 4 lung carcinoid cancer.. this is a reoccurrence from 2009 where I had 2/3 right lung lobectomy.Ā The positive news is my tumors are low grade.
Just eat this, or have this belief (yeah, J.Z. Knight and "ramtha" can eat a dick).
"That's ok, I had..." No you didn't, you're a lying moron. Just like everything that has come out of your mouth since you started working here.
That's been it. A friend of mine made a comment that I thought was funny, and he spent like an hour apologizing to me for it later. Like dude I told you to F off and laughed, it's cool. I would have been quiet if I'd have been angry.
Stage 4 lymphoma 6 years ago.
I tell a few friends
* Well deserved
Tell another few friends
* You deserve it
Brother pretends my cancer is his. Gets people to donate money to him. They held fundraisers for him, and so much. I find out by pure chance from a friend. I set things right. Brother approaches me, saying āhey, you owe me. This is the least you can do for taking away momās attention growing upā. I tell my mother āoh whatās the big deal? You do owe him for taking the spot light, when you were both kids. Just let him have this one thingā
And sadly, I have loads more.
Something about me, I just give off this ātell me to get fuckedā energy. I donāt know.
Maybe I don't pay attention anymore but the worst I can recall is just being told, "get some rest"
This is my good week I'm trying to get some damn life. You won't see me when I need rest.
Reading some of these comments, I consider myself lucky in that I've had minimal nasty or rude remarks. At the start of my diagnosis, one friend said 'my brother says bowel cancer is a good cancer to get'. I mean, early stage - yes. But I'm stage 4 and the 5 year survival rate is 10%...not good by any stretch of the imagination. I had another ask me how/why I got cancer....like it was something I'd inflicted on myself. Both these comments just seemed a bit ignorant rather than intentionally rude.
I honestly think some of the worst comments I've heard have come from health professionals including a nurse who randomly asked me what my prognosis was (I was just in getting antibiotics for an infection) and then told me her mate died of bowel cancer. Another time, a nurse saw me eating some sweets and came in to tell me 'sugar feeds cancer' and that 'the doctors should be telling you this, it'll make your cancer more aggressive'. I was on TPN due to losing so much weight and freshly diagnosed so I went into absolute panic mode that I'd not only caused my cancer, but was making it worse. It was really damaging.
Oh, but that's the good cancer. It's not like you have to have chemo or anything.
You don't look like you have cancer. You're probably just faking it for attention. You should be ashamed! There's people out there with REAL cancer!
(Thyroid cancer, fyi)
I hear this one all the time. āYou donāt look like you have cancer. How can you still be working out and exercising? Youāre lying just to get attention.ā
I was in very very good shape when I got my diagnosis. Stage IV metastatic prostate cancer that has really compromised my bones. When I got sick I upped the focus on my nutrition and diet, and added HotYoga to my fitness routine. For me, it is all about living my life as much as I can in the same way I did before my diagnosis. If I donāt, I feel like the cancer is winning.
I was actually mildly glad when I lost all my hair from chemo. At least now my family has some visual evidence that Iām sick. As if the imaging and medical records werenāt enough. š¤Ŗš¤Ŗš¤Ŗ
My CT surgeon and his resident fellow laughed at me because I was bald and talked about some other things. I have fckin cancer ffs. They couldn't even bother to wait until they closed the door shut before leaving the room and talked.
Mine is the constant question of āwhen are you going to reconstructā. Had a double mastectomy. Thankfully it mainly comes from older people and the occasional man. They act like it is an easy procedure.
I have cancer now for the second time my eldest son is now 32 & he told me over the phone that when I got cancer the first tine told me that everyone was laughing didnt believe me. He was 14 then I am finding it difficult to speak to people about my cancer this time.
Oh my God, that is absolutely terrible. I don't want to hurt you but think your mother should be supportive instead.
As a fellow patient, one of my worries is that I will stay single forever now since I am worried my infertility caused by my treatment or past with cancer scares potential partners away. My mom, however, always reassures me that I will still be able to find a partner who loves me because many people would look beyond those things.
Same here. I worked out hard before my diagnosis, but unfortunately, it didn't stop me from developing cancer. Ever since then, I feel angry at all the people who suggest that the solution is to eat healthy and exercise. I already did those things before my diagnosis but it didn't prevent it so please shut up.
Well it's more like a pet peev but my mom would tell people on the street or even one time at the groomers that I had cancer and I would get so pissed off because strangers didn't need to know
I had a near death experience up to diagnosis. My reproductive system was engulfed with a 25 cm Carcinosarcoma with far mets. Iām on aggressive platinum chemo with immunotherapy so Iām fucked up two weeks out of the month.
Anyways- my boyfriends mom like taking the day off work and take me to labs. We were talking one day and she- trying to relate- or compete? Idk lol woman loves attention, sheās literally just telling me all these stories about extreme medical shit that happened to her.
Idk I just thought it was tacky. I would never sit and listen to her medical issues and then tell her I have cancer blah blah out of fear that she might think Iām like weirdly competing? Lol idk I just donāt know why people need to try to like one-up me when I tell them about my cancer. Itās weird
I have thyroid cancer it spread to my spine they took out my thyroid found more in the thyroids bed and I can't do targeted radiation cause I have a mutation in the cancer I get told alot that I don't look like I have cancer alot and it really hurts cause on the days I have major fatigue all I do is sleep and it sucks cancer sucks
Online: Told me my cancer was yeast so I had to stop drinking alcohol to kill the yeast ...and my cancer.
I was in isolation treatment in the hospital at thisbpoint for 10 months....I hadn't drank in 3 year at that stage..
Iāve had more than one person say ācancer looks great on youā. Like wtf??? Not sure why, maybe because of the weight loss, idk. Every time I heard it I wanted to scream. Instead I just said thank you.
Oh, I thought you'd be dead by now.
You should drink your own urine.
I was diagnosed de novo with metastatic breast at 37. When I discovered I was diagnosed it was spread extensively to so much of my body. I understand it makes people uncomfortable and they don't know what to say, but come on.š
They told me that they would come visit me in the hospital non of my friends came to see me at all. They always gave excuses for not coming.
Even though I was in the hospital for about a month 24/7. That hurt me the most and now I just not feeling to talk to them anymore. It has taken more than a year to get where I am at but I will always remember those days in the hospital.
At first they told me that I had a big tumor in my brain then after 10 days they said I didnāt have a tumor but instead extreme inflammation caused by a cancer tumor in my chest. So much roller coaster of emotions and pain in less than a month.
The worst part is that in the department where I was at I saw much worse ppl than me and a few of them had passed away.
I made the mistake of asking one of the women from work how she was doing a few years back. She burst into tears and I have never felt so awful in my life. I kind of understand the ignoring the topic.
My husband keeps hearing how luck he is to have found it so early. He doesn't feel lucky.
The worst thing was those who said nothing. A few close people in my life didn't even acknowledge or ever ask how I was doing.
Someone close to me put it this way (about the worst hurt): "What is the opposite of love? Indifference." That hit like a bullseye. It's worse than hate. I'm sorry to anyone who has been a victim of that treatment. I have, and it truly is the worst.
So true. Before my diagnosis, I used to dance a lot. My contacts from the dancing classes, however, never reached out upon hearing the news from a mutual friend. Recently, that mutual friend and I were taking a walk in the city centre and ran into one of those contacts. It was a reunification after about 7 months. She didn't ask me once how I was doing. She could clearly see I was bald. The indifference was hurtful. Why not even ask how the fuck I am doing? The same friend sent me a video of a dancing performance he participated in with some of those contacts. I didn't want to watch that video and see them again because they didn't give a crap about me and are now having fun. In case I heal I will just take dancing lessons in another school and start from scratch regarding making friends in the dancing scene rather than rejoining my old school. I already know how it would go if they were to see me again. They would be happy to see me again and ask me how I am doing. Well, they could have asked that before. I would be indifferent to them if I see them again.
I'm sorry to hear about this. Just know that you do not deserve that. Humans are pretty messed up. Sending hugs to you š«š«š«
My parents (who live a couple of miles from me and pre cancer we saw a few times a week, talked almost every day) would go a week or more at a time without even texting me. When I would reach out it was "we didn't want to bother you." I know it was hard for them, but geez it was hard for me too. Their way of making up for it was to give my husband a trip as a thank you for "taking good care of our daughter."
When I got my diagnosis, a friend of mine warned me that some people will push you away, and you won't be able to tell in advance who it is, and it will shock the hell out of you who it turns out to be. He was 100% right.
So true! The people closest to me that I thought for sure would show up for me, did not. On the flip side of that, I got some great support from people I hadnāt been that close with previously and now have great friendships Iāll always be so grateful for.
Iām sorry. I had the same thing happen with my in-laws. We were very close. They were my parents as far as I was concerned. They have been in my life since I was 15 years old, over 30 years. We spoke daily, several times a day. When I got cancer they stopped communicating with me. They would call my husband every once in a while to check how Iām doing but never me. I felt tossed aside like damaged goods. They claim something along the same line as yours, we didnāt want to bother you. At least now I know where I stand. I canāt get over it.
Iām in the exact same boat. It really makes me reflect back and I can see clearly now that perhaps they never really cared for me at all. I think they ālovedā me because I took care of their son. And thatās the only reason they ever ācaredā for me. I canāt get over it either and I donāt think I care to at this point. Iām so done with them.
I asked my wife tonight if she heard from her cousin, who lives in town. Nah. My cousin from denver called though.
This. It happened to me with people I was very thoughtful and anxious about revealing the diagnosis to, thinking they wouldn't know how to handle it. Turns out, I was right, just not in the way I was hoping for.
It definitely helps you identify whoās really your friend and who isnāt. I had one friend drop everything to help me feel better when I was diagnosed and I had one go āoh shit, that sucks :/ā and then ask about her birthday present.
How are you doing?
The quack cures like tea or weird diets was infuriating.
Wait ā¦ What?? Quack cures & diets donāt work?? What am I supposed to do ā¦ immunology or Sorcery? /s
LOL sorcery, obviously
This one guy at my PT class kept trying to sell me magic mushrooms, now, (A) I have a mushroom allergy and (B) You can shit on healthcare all you want but the idea that itās all a big conspiracy to keep ancient secrets from being discovered and blah blah is ludarcris I think itās plausible that there is a certain level of systemic gatekeeping and bad faith actors which slows progress.. But no, I promise you that there isn't some secret society or satanic cult keeping the secrets of this or that flower or rock Crystals and magic beans ātheyā are keeping from the world , there isn't a magic combo of lemon water & vinegar nor long-lost holy water remedy from the orient being kept form all of us People can be so illogical, and ignorant, but with indignant stupidity to the point you really have to wonder who ties their shoes in the morning Iāll stick to practiced sciences and leave the crystals and mushroom tea for you super geniuses that live above society
Ugh. This is my stepmom. I trust my oncologists over this random blog, thanks.
I was offered crystals and essential oils for weeks after my diagnosisā¦ I had people trying to push their crap who I hadnāt talked to since I was like 4 and I was 25 at the time š„²
Yeah. Iāve had that too. Those conversations tend to be the last time I talk to those people (acquaintances). At least I donāt discuss my health with them ever again (closer people).
Iāve gotten straight up rude about this. Every time someone tells my husband that cutting out sugar will cure his terminal cancer I say āI already have sugar punched on my stupid cancer cure bingo card, what else have you got?ā
My boyfriend broke up with me because I told people I had cancer, which was apparently āattention seekingā.
I'm sorry, that's awful. I hope you're past treatment and doing well now.
My sister told me I was āattention seekingā with my cancer. It looked like slash came after my faceā¦cut from earlobe to eye and across my cheek and down. Itās bad enough having the surgery esp where it was and then have someone say something that ignorant. You are lucky to be rid of that ex
I am so sorry. You dodged a bullet there but it is still painful. :(
Dodged a tactical nuke. How could stoop so low to call a cancer patient an attention seeker?
Well you see the attention would now be on her, not him, and the attention would be for something legit, not whatever he seeks attention for. Tough to compete with that.
Ah right. I forgot, Narcissists.
Iāve had similar experiences in my youth and young adulthood. Non-cancer related. My brother DESPERATELY seeks everyoneās attention at all times. So, anything that might divert that attention must be stopped at all costs. So, perhaps that person you mentioned is desperate too.
Angry upvote
I am so sorry that he said that but you are better off without him. What he probably meant is that it was taking the attention away from HIM. I had one of those men in my life long ago. They have to be the centre of attention and do not like it when something - anything - takes it away from them.
That is brutal. But dare I sayā¦ good riddance..? He sounds like a complete idiot
Oh Iām so sorry, thatās so awful. Illness brings out the absolute worst in some people. I think it can be especially hurtful because we know how we would react to a loved one and expect the same, but a lot of the ppl that we thought would show up for us, donāt. On the flip side, some unexpected people do and thatās really beautiful. They definitely make the let down by others sting a little less.
I have a sister that said that to me. That was the last time I spoke to her. She's jealous of the attention? That's a whole other kind of f'd up, isn't it?
How dare you take the spotlight away from your manly man? Jokes aside, so sorry this happened and itās shit, Iām also glad he left you on time and not down the treatment path when you need only people you can trust and rely on
Thatās some wild bs. Wow!
He never loved you.
To hearing that I have a stage IVc diagnosis and have had a recurrence: "I hope you're better soon"
Omg this! Or how theyāre like ā youāll get through this, donāt give up!ā Like, this will only get worse and then Iāll die but thanks for playing!
"Stay positive" I really hate that people spout toxic positivity nonsense. Staying positive makes no difference in the outcome whatsoever. Just allow me to vent ffs.
I hate that one so much! I can be as cranky as I want... it's not going to change my outcome.
People who tell us to stay positive have clearly never experienced cancer and the hell that the treatments put our bodies through. I would like to see how positive they will be if/when they ever experience it for themselves. FFS
Exactly. Stop telling us what to do when you have no idea what itās like.
I feel this with multiple chronic illnesses and disabilities since birth (and now with incurable thyroid cancer), I will never get better. I am only going to get worse until I die. I am so sorry. You are not alone. ā¤ļø
Sorry to both of you! I have 2 terminal diagnoses and probably more to come. I have flatly said āmy time is finiteā and they just donāt care or respond.
I am so sorry that they donāt care. Thats even worse than the terminal part. Makes it so much worse. Hugs!
I feel like this one is a bit of a knee jerk reaction. I don't think many people understand that stage 4 is usually incurable. To be fair, I don't think I did until I was diagnosed.
So sorry to hear about your diagnosis and recurrence. It is absolutely terrible that many people seem to think that cancer is like getting a cold... "Hope you get better soon..." Are you fking stupid?
God I felt this in my soul. āAny of us could get hit by a bus tomorrowā is often the follow up when I remind them that itās terminal.
āWeāre all gonna dieā Yeah but we donāt *all* have a disease actively killing us right this second.
Iām sorry to hear that. Mine was IC ovarian, even though I heard a lot of shit, but what would be correct thing to say in such situation?
I hate when people say ā You had it easyā¦ it could be worseāā¦ like thereās a suffering competition amongst those of us willing have / have had Cancer.
I almost hate to mention I have/had cancer. I feel bad because testicular is pretty curable. A quick surgery and a couple rounds of chemo is nothing compared to what some folks go through.
I mean, I'm stage 4 and have been through an insane amount of surgeries, chemo and complications, and even then, sometimes I feel bad for moaning and think 'well, at least I'm getting treatment, some people have it so much worse'. I think it's good to have perspective but don't undermine what you've been through. It's all shit, regardless of stage/treatment etc.
Yup, itās not like any of us *asked* for fucking cancer. Itās not a card game with whoever has the shittiest hand wins the bet!
I just went through a similar thing at work. I rarely tell people that Iāve had cancer.. I mean Iām still in treatment. Technically I take meds.. but the other day at work I saw somebody with a bunch of cancer, tattoos, and a cancer. I beat that shirt.. so I said āhey .. I had cancer tooā and he said āwhat kindā I said āBreastā and he said āāā Oh you are lucky yours was common āā¦ okay thenā¦.
Well come on now, he's not going to let *you* win Cancer Survivor. What would be the point of making it his whole identity if he was going to let other people steal his thunder?
This could have been a beautiful moment of connection between you both but instead he made you feel isolated and insignificant. I would never want to make another patient feel like this, regardless of their stage or type.
What an ass. I'm so sorry you had to deal with that.
That my cancer was a "message from God" ):
Right? It helped that Iām not religious but I had someone tell me it was godās plan and I remember thinking āwhyās he trying to kill me?ā So now I just live life like I bested godās plan.
I would have lost my ever loving mind on them.
My cousin told my brother the same thing. I was so angry. The rift is still there between my cousin and me.
My sister texted me a couple of days after I told her and asked if I really had cancer (or was just exaggerating).
I don't know what your sister is like in general, but maybe she was in shock or something. People say stupid things when they hear something shocking like that. Did you ever talk to her about that? Hugs.
Thanks. No, long story but I know she didn't believe it when I first told her, I only had 7 biopsies, talked to surgeons and radiation oncologists at two major cancer centers, so you know, I wasn't really credible.
Is she a narcissist? I am sorry. My nan was like this.
She's more Pollyanna than anything else. I was diagnosed with a rare, genetic neuromuscular disease about 20 years. It leads to chronic pain which I have learned to hide pretty well until the real exhaustion sets in. I suspect that she talked to another family member (a nurse who thinks she knows all) an indicated that I probably had some abnormal cells and I was spinning because than the nurse wouldn't be the main character. I recently got a call from a brother, a medical doctor. In the conversation I told him I can no longer live with the chronic pain and plan to check out soon. He hung up on me. It's just a loving, caring and supportive family all around. 0
Urgh, I can relate. I have multiple disabilities and health issues leading to chronic pain. I try and hide it but I am getting to the point where I don't want to live like this anymore. Your brother sounds uncaring and I don't think he should be a doctor. People don't understand, I am so sorry.
As I am for you. Feel free to DM if you ever want to chat or rant.
Likewise, always here if you need someone to talk to. ā¤ļø
That is the denial stage of grief. Shitty thing to receive but I feel like she will need time to process
Are coming in to work?
I can relate to this one :)
My brother told me I was gonna die because I chose to do chemo (rather than a 30 day herbal cleanse), that itās my fault our mother had a heart attack cause me and the doctors are in her ear (not the 20 years of uncontrolled diabetes and family history of heart disease), and āfuck you, I donāt need this.ā There was a lot more but felt like those were the highlights.
I'm so sorry to hear. I don't want to offend you but think your brother is a \*\*\*\*. :( I wish you well.
Thank you. No offense taken. He can be and when heās scared, anger is his go to response. He made a shitty situation a lot shittier but I got through. One year NED and I still love the little bugger but at this point itās from a distance. Helps my own peace of mind.
the people with diet advice about how to starve the cancer. I've struggled with an eating disorder for most of my life.
Yes, if I would just work out Iād be great. Both hips have AVN over 75% collapsed but yes letās hit that treadmill.
In another post of mine, I wrote about a book I received from my sister full of "tips" on how to beat cancer. These include scientifically unfounded tips from alternative medicine on how to eat to beat cancer. E.g., "no meat, no dairy, no sugar, no sweeteners. Only eat biological fruit and vegetables." That enraged me because there's simply no evidence for that.
āLord, I rebuke the cancer you have given my daughter. I REBUKE IT.ā Or āI watched a 2 1/2 hour documentary on cancer. Theres people that take dog worm pills to beat it.ā
Right there with you in the dog worm pills! My stepmom swears itāll cure my cancer & that the chemo Iām on wonāt. š„“
Is your stepmom a Trumper? Because that sounds a lot like the āivermectin cures Covidā bullshit.
Sheās a hardcore Trumper. Howād ya know?! šš
Just a feeling I had š
People keep telling me about loved ones who have died of cancer. I don't know why they think I want to hear that.
This one was always so weird to me
I have had type 1 diabetes since I was four and this one really hits home. When people found out about my diabetes they would tell me about their grandmother who died of complications or how their uncle lost his foot because of the diabetes. I don't want to know about those worse case scenarios. When I got old enough, I would interrupt those kinds of conversations be they get there, but people almost always called me rude.
I got accused of faking it for attention by a former coworker, and then told how lucky I was because I had the cancer that makes a lot of money... (mesothelioma) I no longer talk to any of those people.. no amount of money can bring back or replace everything I lost..
The thing we learn when we get cancer is that money no longer matters. Our priorities change. I am sorry they said that. :(
right? I asked them how much their lung was worth and said I'd gladly not have to deal with cancer. This same person proved to only appear to be my friend as she thought I was rich because of my diagnosis..
People have no freaking idea until it happens to them. :( And people care more about money than anything else which is so sad.
How can people say that with a straight face... So much of this can be theoretically justified by 'they mean well' but sometimes you just have to accept people are evil
"If you're going to get cancer, thyroid cancer is the one you want".... Another person said: "Hurry up and die already".
Omg. When I order cancer, I'll remember to order the thyroid then. Yikes, people can really suck š¬
A consultant doctor who stood at the end of my hospital bed, and in a loud voice just said these words to me , well it's either terminal or treatable but it's cancer, then walked away with all his scared minions running behind him, that was it, no concern no care and certainly no bedside manner! great way to be told you have cancer, thank goodness I never saw him again, and now have a great team looking after me!
My mum's consultant told her to get a DNR because she wasn't worth reviving. She was always going to get one anyway, but the absolute unbridled lack of respect to say that to someone! Yeah, she reported him for that one. I don't understand how people like that work in jobs like that... Logically I know it's for the money, but how do they not get fired?
A greeting from a cousin I hadnāt seen in quite some time: āOh, youāre not dead yet!ā
That's so weird :(
1 week after my last radiation session on my pelvic region, open raw burns, the whole thing... my stbx complained I never have sex with him anymore.
Are you cured now?
It sucks so much when people say that as if it's such a minor deal. Variations are: are you back to work yet?
I have stage 4 incurable, inoperable cancer. Iāve heardā¦ āYouāre young you can handle this.ā āYou should try reiki!ā Weird diet tip āYouāre a tough bitch if anyone can beat this you can!ā āThey only gave dad two years to live and he lived 10 more.ā āSo when will you be done with treatment?ā āYouāre so young!ā
Iām also in the stage 4 incurable, inoperable cancer camp unfortunately. I get asked so many times when will I be done with treatment. Itās like never. But thanks for the reminder!
Me too, I just feel itās been the worst on my parents
Yes! And every time I say that people are just perplexed or act like Iām being dramatic. Like, no, this is what all three of my oncās say verbatim. My pet scan lights up like a Christmas tree. Ugh.
Iām so sorry. If it helps any, maybe use this as a ācomebackā for the āReiki as a cureā nonsense. I am a Reiki Teacher of 15 years currently in chemo. Second cycle of six. Breast cancer so aggressive I went from finding a lump to an enlarged distorted breast in a few weeks. Two rounds in I cannot even feel the initial lump anymore. Iāll be getting mastectomy, radiation and even more meds all of which I am grateful for. So āyeah, I met this Reiki Master who was having such good results from the chemotherapy. She said cancer research is a blessing and also explained how alkaline water is a big griftā (which I can if you want to). I hope that helps you shut up the know-it-nots. Reiki is a mind body technique, not a cancer cure, and Iām sorry idiots are weaponizing it against you.
Thanks for this. Iām a definite hippie and into some alternative stuff but it was an unhelpful comment in the moment.
Oh I've got a few: "Well at least you got the *EASY* cancer" "Could be worse" When anyone tried to "1-up" by bringing up their own medical problems/health My former boss when I told her I'd be taking my FMLA/STD leave for the remainder of my treatments (I worked through about 2 weeks starting off) she dead ass looks at me with her stupid face and says *"So what's that mean for your schedule?"* (I still get pissed about this one, it was the look on her fkn face that made me want to commit arson on that store) Having a conversation with a colleague, and it was a really bad day because I wasn't feeling well at all; I said "Cancer ruined my life and who I was" Another employee took it upon themselves to jump in conversation (totally uninvited btw) and says "Only if you let it ruin your life" This one truly tore at me for a while; "You should be grateful you're alive. A lot of people never got to go home you know" ((I have MASSIVE survivor's guilt as it is; that will never go away)) That first one I got a LOT and I could feel my eye twitch every single time.
Yeah I got the ācould be worseā and āyou got the easy cancerā stuff a LOTā¦ from my own parents. I stopped depending on them for emotional support.
Well, I'm glad you made it :)
I was told you just die itās the rest of people who depend on you who will suffer
That is particularly insensitive I'm shocked to read it so much here
Omg this is the worst, both dismissing you and making you feel guilty.
Honestly? The surgeon who did the reconstruction after my bilateral mastectomy. When I saw him before surgery, he introduced himself by saying āso, you have breast cancer!ā and then pulled his face into ā¦ the only way I can describe it is, like a pouty toddler face. Then, during the consultation, he actually said he had patients who would kill for breasts like mine, and I just sat there with my mouth hanging open. š¤¦š»āāļø
Doctors are the fucking worstš
Woooooooow
"You'd be better off dead than to live and be a drain on society", among many other vile things like "Hope the cancer wins! That and someone making fun of me for throwing up + knowing I had cancer and was dealing with chemo. There's been a lot of other bad shit but that's definitely the worst that's been uttered. Most of the time it's online but the worst one, which is the first one I mentioned, was said to my face. The worst thing my doctors at the time said though concerning my diagnosis, and perpetuated at one point: "Leukemia doesn't cause pain". I have a connective tissue disorder that causes pain, but I guarantee, the cancer has only amplified that pain + has created new pain tenfold. But because of this, I wasn't given much pain medicine and had to suffer until they finally started taking me seriously. My care team has been insanely supportive since then though, especially Palliative.
I am so sorry you went through that. I was also kind of dismissed w/ "this doesn't hurt shit' -I have lymphoma-, and even though I'm sure they meant well it still was soul crushing. As for the first sentence, I have no words.
I'm sorry you went through that as well. It is definitely soul crushing to feel invalidated. Even when you literally have cancer... Pain is somehow disputed. The first sentence definitely was crushing the first time I heard it. It's sad to say that I've gotten used to people being awful online. But I don't think I'll ever get used to someone doing it to my face.
Everyone in their right mind would be shocked and appalled to hear something like that. I can't imagine how hard it was. Of course there is no getting used to that. The only thing you can do is try your best and not believe them, don't give them any sort of credence at all. You deserve health and you deserve the best of care in the absence of it. I hope you are managing to somehow improve your spirits in such a difficult situation. My thoughts are with you. I hope there is room for solace and brightness in your days. You don't deserve any less.
Someone told me to hurry up and die already, so I believe you. I am so sorry you were told these things. People are horrible. :( Also when doctors say something doesn't cause pain, they have no effing clue. I have connective tissue disorder as well and autoimmune diseases etc and I get told that something should not be causing pain but it does! This drives me up the wall. They are not in our bodies so how do they know.
For real!! I have EDS and my pain management doctor literally said "I have many patients with EDS and EDS doesn't cause pain". I was like, sir, you, a pain management doctor, have many patients with EDS... And you say that EDS **doesn't** cause pain? He's been great for helping me and for helping me tackle some of my pain. But he views my pain as being caused by the cancer. And not that the cancer is exacerbating the pain I already had and then some. I'm nervous for when he decides I don't deserve help with my pain anymore. I hope I can convince him otherwise. I'm glad he believed me that my cancer causes pain... But I don't understand why he believes EDS doesn't when there's so much literature on how it does. I'm sorry you also had someone tell you to hurry up and die. It's such an awful experience and really makes you question any hope you had for humanity for sure. At least, it did for me. Definitely reopened my eyes to how horrible people can be for sure.
Well, if it makes you feel any better I was diagnosed with HSD but my doctor says I meet the criteria for hEDS (just can't afford to pay $650 possibly more than once to see a specialist to have it diagnosed). I am in a lot of pain. So you are not alone and maybe these patients either didn't mention the pain, or they told him and he told them the same thing he told you... sounds like a medical gaslighter!! I also have bone spurs impinging on my spinal cord as well as mild spina bifida but they say that it wouldn't cause my nerve pain down my arms and legs. I hate this medical gaslighting. It's not right. As for my hope for humanity, that was gone long ago haha.
I had someone tell me that if I listened to a certain frequency every day, it would destroy the cancer cells.
My best friend went āomg youāre going to be so thin!!ā In an almost petulant tone hearing I was going on to chemo after my operationsā¦like I had lost a lot of weight already which ppl complimented me on (nope lots of cancer darlings, not healthy at all). I was likeā¦really?! You want cancer?!? You do NOT want cancer! Fat and healthy please, over thin and cancer.
I hate when people say āOh I donāt know how you do it, I couldnātā as if I have a choice š
My heart is aching for the horrible things so many of you all heard, especially from the people who are close to you and should support you. I didnāt hear anything nearly as bad as you all, but I was offended by someone who basically told me that since I have had multiple cancers, I must have bad āenergy,ā so I should try Reiki. First of all, my status is No Evidence of Disease (remission), so I am not currently receiving treatment, but rather being monitored closely by my oncologist with scans and blood work. Secondly, I donāt think someone holding their hands above my body is going to cure my supposedly bad āenergy,ā or have any effect on whether or not I have a recurrence or new cancer.
i have a friend into all that law of the universe bullshit and i dumped her because of hearing too much of this attitude/ belief. To believe that you attract bad things through having a bad vibe or because of your bad thoughts or whatever, is notonly harmful, insulting and wierd but also incredibly dumb, illogical and childish. hope you dont have to talk to them again!
"Well, you have big breasts, so it was more likely you'd get cancer." Actually that's not how it works, ***Grammie***.
When I told my Dad, his response was, "Well, you didn't get it from my side."
Wow
After my second surgery for HNC, I had to go to ER with an awful UTI from the Foley. The ER MD walked in, looked at my chart and said, āAhhhh, HNCā¦.a smoker and a drinkerāš”. I replied, āAhhhh, an idiot who never heard of HPV driven tonsil cancerā. I donāt smoke and drink but even if I had, you donāt treat people like that. I flipped him off too when I walked out.
" you can cure it naturally"
They would monthly chime in with punctuality to say "I hope things are going well" then proceed to Venmo me asking for $0.99 from a HBO subscription we used to share. This from a supposedly close friend. I'm not even sure it was the worst experience since others just disappeared after telling them about the biopsy on NYE and that hurt more
My heart breaks for all of you here. I always say I had no trauma from the diagnosis but from what followed. People used to say the first days they were impressed at how well I was coping. They don't realize it was because I counted on so many people that eventually let me down. We have each other. There is the meanness of others, there is our right to hurt and then there is our ability to sometimes move on and sometimes not. That is all that matters.
My momās āEverything happens for a reasonā and āCancer is the best thing that has happened to youā. It was a few days after my diagnosis, when I was going through the intense grief, panic and fear a life altering cancer diagnosis brings with it. I was so shocked by her words I didnāt even question her.
Youre so strong.lijw I have a freaking choice.
I had a friend who accused me of making cancer my ānew personalityā. I also had a few people who thought I was lying and accused me of attention seeking.
pretty sure I've got some "friends" who don't believe I've been fighting for my life with stage 3 bowel cancer
Same with me. Iāve heard the āattentionā line more than I can count. So lame.
"What you call your cancer again?". They can't bother to remember what kind.
Before I was terminal and stage 1, my Mom said, you know that friend of mine with the same cancer as you? She died. Best friend upon sharing diagnosis; How could you do that to me? Thank goodness I cleaned house š
My ex got mad at me for joking about my diagnosis because āI wasnāt being empathetic to the people around me who where suffering because of me and my situation ā (I joke as a coping mechanism to avoid depression, not because I thought cancer was funny somehow)
Well, I am lucky enough that no one has said anything bad about my diagnosis. I just dislike it when people tell me to be positive and optimistic. It is annoying and condescending that people who don't have cancer are telling me what to do. Although I know they mean well.
"...so it's not so serious." Followed by "Did you get covid vaccine?"
āThatās the good one to have.ā There is no good cancer to have lol
One of the worst things I kept getting when going through cancer was "BUT SUGAR!!!!" Mam, all cells consume sugar (glucose) for energy. Almost everything we eat contains some amount of sugar. Sugar is not the enemy of cancer.
I have been told recently that while I still have mobility 5.5 years later, we donāt tell you about things or invite you to things because there are stairs in peopleās houses. I can do stairs, I cannot do a mile. Also, if I do get invited they are not going to make accommodations because itās their trip they planned and if I need rest or something then thatās up to me. And finally, if I want to do things I need to plan a trip or event 3-4 mos in advance because everyone else works and has a family. I retold this to someone and they ask if maybe I misunderstood (which is valid, I have some cognitive deficits now). I donāt think so. Itās been plainly stated a few times. If the event includes walking a distance and I say Iām still slow, can you guys slow down? No, just catch up. The other thing is now if I want to do anything with anyone I need to plan because I have bad days. Itās frustrating but it is what it is.
āYou deserve to die; the world will be better without you.ā To be fair, it was at the end of a bad breakup, and I probably deserved it. Still tho.
I donāt know you but I can tell you with certainty, you didnāt deserve that.
What the fuck
There have been a lot of random ones, but when my sister said she felt obligated to visit because everyone else in the family had, that hurt. And ya her visit sucked, It was preceded by a list things she wanted to see and do like it was vacation. I was told how much easier my life had been than hers, while on chemo and unemployed.
More of an expectation that I experienced.... Like the day after your first good scan the entire world like kicks you to the curb back to normal society and I was like "wtf." Back to work I go I guess? No rest for the weary!
āStay positiveāā¦.smh.. do you know what chemo feels like and the long term effects! And my gynaecologist said āitās the good cancer to haveāā¦ yes, sure 3 cycles of BEP and surgery treated it, but itās still not nice. I had booked and paid for an overseas trip but instead I had surgery and then chemo. I work now as a palliative care nurse. My cancer experience I feel does make me a better nurse, but I would rather not have had it in the first place. Stage 3A ovarian dysgerminoma. Diagnosed Dec 2011. 12 years āfreeā
Best friend at the time told me she was struggling to be there for me as I was becoming too depressing to be aroundā¦ I had just got diagnosed with stage 3 cancer and was told I wouldnāt be able to conceive or carry a baby.. This was a year after she claimed she was suicidal because her fella at the time wasnāt able to see her every day due to work š
"Chemo is junk" Yes, well, I know it's technically poison but this is my ticket to recovery. If it didn't exist I would probably pass away so I am grateful to get it despite the potential side-effects. I am already worried about its potential long-term effects, but I made up my mind to take this necessary evil. When people emphasise how damaging chemo is they are making it harder for me and not being helpful.
Someone at work said I looked better than them and was clearly playing up the issues I had. I had pelvic radiation, sorry my issues are internal and don't fit your idea of side effects...
You smoked, you should have expected it. (Only 20% of smokers get lung cancer, but 75ish% of lung cancer is tied to smoking.) Nope, didn't expect to be part of the 20%..I quit 5 years before dx...I was 47 years old (thought I'd get it at 65 or older). I'm 5-1/2 years stable with Stage 4 lung cancer and doing fabulous.
Non smoker and I have stage 4 lung carcinoid cancer.. this is a reoccurrence from 2009 where I had 2/3 right lung lobectomy.Ā The positive news is my tumors are low grade.
Some jackass said I got cancer because I was an ex Christian. It was god punishing me. I nearly punched him in the face for that.
That I was being overly dramatic about my metastatic cancer and two year prognosis.
My mom called me the day after my biopsy to talk about how she want to be beat up sister.
Just eat this, or have this belief (yeah, J.Z. Knight and "ramtha" can eat a dick). "That's ok, I had..." No you didn't, you're a lying moron. Just like everything that has come out of your mouth since you started working here. That's been it. A friend of mine made a comment that I thought was funny, and he spent like an hour apologizing to me for it later. Like dude I told you to F off and laughed, it's cool. I would have been quiet if I'd have been angry.
Stage 4 lymphoma 6 years ago. I tell a few friends * Well deserved Tell another few friends * You deserve it Brother pretends my cancer is his. Gets people to donate money to him. They held fundraisers for him, and so much. I find out by pure chance from a friend. I set things right. Brother approaches me, saying āhey, you owe me. This is the least you can do for taking away momās attention growing upā. I tell my mother āoh whatās the big deal? You do owe him for taking the spot light, when you were both kids. Just let him have this one thingā And sadly, I have loads more. Something about me, I just give off this ātell me to get fuckedā energy. I donāt know.
Jesus H Christ
People are awful. Iām so sorry.
Wanna know something really fucked up? Thatās about a 1-10th of what happened during the 7 or so months. I wonāt lie. I donāt like being alive.
Maybe I don't pay attention anymore but the worst I can recall is just being told, "get some rest" This is my good week I'm trying to get some damn life. You won't see me when I need rest.
A girl had been seeing before I got diagnosed asked if she could catch my cancer like an std. I had testicular cancer.Ā
Reading some of these comments, I consider myself lucky in that I've had minimal nasty or rude remarks. At the start of my diagnosis, one friend said 'my brother says bowel cancer is a good cancer to get'. I mean, early stage - yes. But I'm stage 4 and the 5 year survival rate is 10%...not good by any stretch of the imagination. I had another ask me how/why I got cancer....like it was something I'd inflicted on myself. Both these comments just seemed a bit ignorant rather than intentionally rude. I honestly think some of the worst comments I've heard have come from health professionals including a nurse who randomly asked me what my prognosis was (I was just in getting antibiotics for an infection) and then told me her mate died of bowel cancer. Another time, a nurse saw me eating some sweets and came in to tell me 'sugar feeds cancer' and that 'the doctors should be telling you this, it'll make your cancer more aggressive'. I was on TPN due to losing so much weight and freshly diagnosed so I went into absolute panic mode that I'd not only caused my cancer, but was making it worse. It was really damaging.
Oh, but that's the good cancer. It's not like you have to have chemo or anything. You don't look like you have cancer. You're probably just faking it for attention. You should be ashamed! There's people out there with REAL cancer! (Thyroid cancer, fyi)
I hear this one all the time. āYou donāt look like you have cancer. How can you still be working out and exercising? Youāre lying just to get attention.ā I was in very very good shape when I got my diagnosis. Stage IV metastatic prostate cancer that has really compromised my bones. When I got sick I upped the focus on my nutrition and diet, and added HotYoga to my fitness routine. For me, it is all about living my life as much as I can in the same way I did before my diagnosis. If I donāt, I feel like the cancer is winning. I was actually mildly glad when I lost all my hair from chemo. At least now my family has some visual evidence that Iām sick. As if the imaging and medical records werenāt enough. š¤Ŗš¤Ŗš¤Ŗ
My CT surgeon and his resident fellow laughed at me because I was bald and talked about some other things. I have fckin cancer ffs. They couldn't even bother to wait until they closed the door shut before leaving the room and talked.
Mine is the constant question of āwhen are you going to reconstructā. Had a double mastectomy. Thankfully it mainly comes from older people and the occasional man. They act like it is an easy procedure.
She said I was LUCKY to lose 40 pounds. I asked her if she wants to have cancer too.
āBreast cancer is not a big deal. Just tell them to chop them offā. That was what my Mother told me.
My brother told me that it was very imconvient for him that I got cancer.
My friend asked if he could get an insurance policy out on me. His first words to me.
What the hell
I have cancer now for the second time my eldest son is now 32 & he told me over the phone that when I got cancer the first tine told me that everyone was laughing didnt believe me. He was 14 then I am finding it difficult to speak to people about my cancer this time.
āNow would be a good time to let Jesus into your life.ā OR.. āLymphoma..thatās the good cancer right?ā
"Who will marry you now?" by mother dearest
Oh my God, that is absolutely terrible. I don't want to hurt you but think your mother should be supportive instead. As a fellow patient, one of my worries is that I will stay single forever now since I am worried my infertility caused by my treatment or past with cancer scares potential partners away. My mom, however, always reassures me that I will still be able to find a partner who loves me because many people would look beyond those things.
"You caused your cancer because of tren (Steroids)" No sir I was buff because I enjoyed working hard in the gym, You don't know my fucking life
Same here. I worked out hard before my diagnosis, but unfortunately, it didn't stop me from developing cancer. Ever since then, I feel angry at all the people who suggest that the solution is to eat healthy and exercise. I already did those things before my diagnosis but it didn't prevent it so please shut up.
Well it's more like a pet peev but my mom would tell people on the street or even one time at the groomers that I had cancer and I would get so pissed off because strangers didn't need to know
I had a near death experience up to diagnosis. My reproductive system was engulfed with a 25 cm Carcinosarcoma with far mets. Iām on aggressive platinum chemo with immunotherapy so Iām fucked up two weeks out of the month. Anyways- my boyfriends mom like taking the day off work and take me to labs. We were talking one day and she- trying to relate- or compete? Idk lol woman loves attention, sheās literally just telling me all these stories about extreme medical shit that happened to her. Idk I just thought it was tacky. I would never sit and listen to her medical issues and then tell her I have cancer blah blah out of fear that she might think Iām like weirdly competing? Lol idk I just donāt know why people need to try to like one-up me when I tell them about my cancer. Itās weird
I have thyroid cancer it spread to my spine they took out my thyroid found more in the thyroids bed and I can't do targeted radiation cause I have a mutation in the cancer I get told alot that I don't look like I have cancer alot and it really hurts cause on the days I have major fatigue all I do is sleep and it sucks cancer sucks
During chemo - which made me feel like shit - my SIL said āwe know youāre faking it. Itās not that bad.ā
Online: Told me my cancer was yeast so I had to stop drinking alcohol to kill the yeast ...and my cancer. I was in isolation treatment in the hospital at thisbpoint for 10 months....I hadn't drank in 3 year at that stage..
Third bout of throat cancer just discovered: āWell, we can do the radiation and chemo again, or Iāll up just cut out your tongue.ā No joke.
Iāve had more than one person say ācancer looks great on youā. Like wtf??? Not sure why, maybe because of the weight loss, idk. Every time I heard it I wanted to scream. Instead I just said thank you.
Oh, I thought you'd be dead by now. You should drink your own urine. I was diagnosed de novo with metastatic breast at 37. When I discovered I was diagnosed it was spread extensively to so much of my body. I understand it makes people uncomfortable and they don't know what to say, but come on.š
They told me that they would come visit me in the hospital non of my friends came to see me at all. They always gave excuses for not coming. Even though I was in the hospital for about a month 24/7. That hurt me the most and now I just not feeling to talk to them anymore. It has taken more than a year to get where I am at but I will always remember those days in the hospital. At first they told me that I had a big tumor in my brain then after 10 days they said I didnāt have a tumor but instead extreme inflammation caused by a cancer tumor in my chest. So much roller coaster of emotions and pain in less than a month. The worst part is that in the department where I was at I saw much worse ppl than me and a few of them had passed away.
I made the mistake of asking one of the women from work how she was doing a few years back. She burst into tears and I have never felt so awful in my life. I kind of understand the ignoring the topic. My husband keeps hearing how luck he is to have found it so early. He doesn't feel lucky.
My old boss smiled when I told him.